A Few Caveats About Online Support Groups
A Few Caveats About Online Support Groups
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Starting or joining an online support group can be a valuable way to trade disease management advice and encouragement, particularly for those newly diagnosed. But there are pitfalls.
Here are some tips from Brian Loew, chief executive officer of Inspire, and Stefanie Putkowski, clinical information specialist for the National Organization for Rare Disorders (NORD), on making the most of such networks while protecting against potential problems:
¿ Check the bona fides of any site you're considering signing up with.
The more trusted the site, the more trustworthy the information you're likely to glean from it. The more than 2,700 groups listed in NORD's index of organizations have been vetted for compliance with NORD's rules on ethics, profitmaking and more.
"Some groups that are very popular are not in our database because they have strong political agendas," Putkowski says. If in doubt, check credentials with a trusted parent group such as the Leukemia & Lymphoma Society or the American Heart Association.
¿ Choose a site that doesn't require your name, address and other personal identification -- or lets you hide them.
Use some other identifier instead. When in doubt, assume that anything you type can be picked up by a search engine. That may not be a problem if you're sharing advice on migraine headaches; genital herpes is another matter.
If you're looking for others of your age or sex with your medical condition or treatment, make sure any information you enter is encrypted.
¿ Don't use an online community as a substitute for a doctor-patient relationship.
